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Lindsay Spengler happy to be on the field again


Lindsay Spengler happy to be on the field again


By Jennifer Hetrick
Times Writer

After several years spent dealing with the effects of RSD—Reflex Sympathetic Dystrophy, Lindsay Spengler of Gilbertsville is finally enjoying the perks of a normal life, which for her is bound to involve the sport of softball.

Spengler, 25, first experienced symptoms of RSD, also known as Chronic Regional Pain Syndrome, when she injured her thumb at age 13.

“RSD is a central nervous system problem,” Spengler said. “It often comes out after the onset of an injury.”

Instead of the body healing, pain signals continue to be sent. In RSD patients, the nervous system goes haywire and over-responds, Spengler said.

“If you would touch something, your nerves would fire once or twice,” Spengler said. “A person with RSD touches something, and their nervous system fires 20, 30, 40 times, which causes a burning pain.”

Spengler’s onset of RSD was relieved with physical therapy but returned to an even more serious extent after an ankle injury.

By her junior year in high school, she was forced to stop playing softball and could only take a few classes after the condition began to affect her balance and concentration.

She endured nervous system complications, headaches, nausea, and eventually respiratory failure all linked directly to the RSD.

The problems worsened considerably after Spengler graduated from high school in 2002.

By spring of 2007, Spengler said her doctor decided the best option for her would be a ketamine coma.

With inducing a ketamine coma, “the idea is to shut the nervous system down, allow it to rest, and then start to wake you back up,” Spengler said. “It’s a lot like you’ve rebooted a computer.”

Due to the controversy surrounding the use of this treatment in the global medical community, it is only performed at special facilities in Germany and Mexico.

Originally, Spengler planned to visit Germany for the treatment after residents of the Boyertown area and surrounding communities fundraised to help pay for the high costs involved, which totaled around $250,000.

Spengler said her doctor later decided to send her to Florida for a consultation with a physician who was working on a study at the San José Hospital in Monterrey, Mexico.

“After the coma, a lot of retraining is involved—learning how to sit up again, how to walk again,” Spengler said.

“There were drastic marked improvements,” she said.

Spengler stayed in Mexico for nearly three and a half months and was eating full meals after two months, which her doctor said was miraculous, as she had not eaten solid food in five years due to the RSD’s complications.

“I am considered in partial remission at this point,” she said. “I still have very slight pain in my right ankle where it originally started. I don’t have pain anywhere else.”

Much to Spengler’s happiness, her improved circumstances meant she could finally do many things she couldn’t while limited physically because of the RSD.

During the 2009 season, Spengler served as a volunteer coach for the varsity and JV softball teams at Boyertown Area Senior High.

“Now with my illness, I really can’t play competitively anymore,” Spengler said. “It’s just too risky if I would get injured, so coaching is a great way to still be a part of the game that I’ve loved for so many years.”

“I enjoyed spending time with them so much,” Spengler said about the girls on the softball teams. “They were just always excited to be there, and they were great working together as a team.”

“If at all possible, it would be my pleasure to do it again,” Spengler said regarding volunteer coaching next season.

As she plans to start college in the spring, Spengler said she doesn’t know yet if coaching will work with her schedule.

“The biggest thing I want people to know is how grateful I am—how grateful my family is,” Spengler said about the local community’s fundraising efforts for her medical expenses, which helped her to be where she is today. “We always feel like no matter how much we say, it’s just not enough.”

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Special K is Tough on Pain


Special K is Tough on Pain

A promising but unproven treatment for people in chronic pain highlights obstacles of using mature drugs in off-label ways.

By: Janice Arenofsky
September 28, 2009
05:00 AM (PDT)

Ketamine has captivated physicians and teens ever since 1970 when the FDA approved the drug as a surgical anesthesia, and young adults started getting high on it. First marketed as a veterinary anesthetic, ketamine — which is chemically related to PCP and encourages psychological and physical dependence — quickly caught on with drug abusers. By 1981 the U.S. Department of Health and Human Services recommended ketamine’s reclassification as a controlled substance, but the DEA rejected the idea until 1992 when it received 775 reports of ketamine abuse, including veterinary clinic burglaries and hospital emergency room visits.

Despite an association with date rape and other hallucinatory drugs, infusions of ketamine now represent last-resort therapy for those with the intractable disease known as complex regional pain syndrome. The only drawback to treatment is patients literally may be betting their lives against this unorthodox, and potentially excessive, use of the drug.

“It’s a crappy disease,” said Philip Getson, clinical associate professor of neurology at Drexel University College of Medicine in Philadelphia. The syndrome ranks No. 1 in painful chronic conditions, according to the McGill Pain Index, and its symptoms include unbearable burning and sensitivity, muscle spasms, inflammation and problems with concentration and memory.

Like many pain management experts and despite the dearth of controlled studies, Getson uses ketamine off label. The most powerful of a set of anesthetics known as the NMDA (for N-methyl-D-aspartate) antagonists, ketamine blocks the sensitization process in the central nervous system, allowing pain cells to normalize.

Despite its awful symptoms, complex regional pain syndrome (also called reflex sympathetic dystrophy) remains difficult to diagnose. While the nonprofit RSDHope estimates 1.5 to 3 million with the syndrome in the United States, Getson believes that’s a gross undercount, and that the true number is closer to 6 million, with women experiencing it disproportionately.

Plus, disagreement over number and type of diagnostic criteria (i.e. should statisticians factor in fibromyalgia as an indicator) can hurt recruitment for trials, said Jim Broatch, executive director of the RSD Syndrome Association. “Insurers don’t want to diagnose it because it’s costly to treat.”

That reluctance echoes on the treatment side, as promising therapies involving ketamine have faced obstacles. “The FDA has taken a hands-off attitude [on ketamine],” says Getson, referring to the agency’s trend toward less control of off-label use. Randall S. Stafford, associate professor at the Stanford Prevention Research Center in Palo Alto, Calif., believes that laxness discourages evidence-based practice — medicine’s gold standard. The option of off-label use sends the wrong message to drug manufacturers: Why bother conducting hard, costly studies on pharmaceutical products already in the pipeline if later you can seek approval for secondary applications and run clinical trials that are much cheaper, simpler — and patient centered?

Enmeshed in the conflict between investigational science and sympathetic intervention is ketamine researcher Dr. Anthony Kirkpatrick, chairman of the Scientific Advisory Committee of the Tampa, Fla.-based RSD Foundation. Kirkpatrick performs three-day, low-dose outpatient procedures using ketamine. But he reserves a sort of secret weapon, the “ketamine coma cure” — a high-risk procedure in which patients placed in a medically induced coma receive a continuous five-day, 600-mg-to-900-mg infusion — for RSD victims with “catastrophic” conditions and “no alternative, no recourse.”

“Many are suicidal,” Kirkpatrick says, musing over the ethical implications of denying possible relief in those circumstances. Is it morally correct, for example, to randomize patients into two groups (one group receiving ketamine, the other put on temporary hold) or to administer a placebo or a different anesthesia such as propofol for the sake of science?

Ethics aside, funding is another hurdle. Since generic ketamine is freely available, pharmaceutical companies aren’t interested in financing expensive studies. “The costs [of clinical trials] are so huge, I’ve heard of doctors leveraging their houses,” Kirkpatrick said.

Off-label use is not without its risks either. Malpractice claims bankrupt physicians (from1985 to 2008, the payout for anesthesiologists was around $671 million; for neurosurgeons, $500 million, according to the 2009 Physician Insurers Association of America Risk Management Review for Combined Specialties). Although ketamine’s wide safety margin provides some comfort, patients on respirators with their brains shut down (as in the ketamine coma) could conceivably not wake up. Plus, Kirkpatrick said, “horrific” hallucinations can emerge up to a week after the infusion.

Such risks help explain why the procedure is only done in Mexico by Mexican physicians – outside the sway of American regulators or attorneys.

Still, the cost benefits balance out, said Houston physician Everton Edmondson, one of a growing number of off-label ketamine practitioners in the United States. A few years ago Drexel University’s Robert J. Schwartzman — probably the country’s foremost RSD expert – performed 95 percent of infusions. Now, there are around 20 such mavericks, says Broatch.

Demand for the intervention – given that even a mild trauma such as an injection, an everyday fall or a simple sprain can trigger RSD – partly explains the increase in practitioners. Rapid diagnosis and treatment can curtail the progression, but for patients whose excruciating pain has spread to other sites, ketamine therapy is “close to a miracle,” says Joshua Prager, (http://crpsdoc.blogspot.com/ ) director of the (http://www.californiapainmedicinecenter.com/ ) Center for the Rehabilitation of Pain Syndromes at UCLA, a tertiary medical practice there that treats patients with complex regional pain syndrome as well as severe back pain, neuropathic pain and cancer pain. “The pain usually stays away three months, but one patient was pain free for a year.”

The lower-dose infusion success rate is around 80 percent, conclude Schwartzman and Kirkpatrick, but pain returns without “booster” treatments – two studies totaling 36 patients showed immediate cures half the time, with pain reappearing within six to nine months. A double-blind, randomized, placebo-controlled low-dose trial in The Netherlands – a four-day infusion of 60 patients — later confirmed those results. Schwartzman is currently evaluating data from another controlled low-dose trial.

Unfortunately, even less safety and efficacy evidence exists for the ketamine coma, which American-trained physician Fernando Cantu administers to carefully screened patients at San Jose Hospital in Monterrey, Mexico. A total of 10 published case studies describe nearly total pain relief with no neurocognitive deficiencies, and Schwartzman’s recent report on 20 German coma patients detailed not only significant moderation of pain, but also greater mobility, quality of life and work potential. Anecdotally, the media reported two casualties one death and one paralysis – the latter resulting from pneumonia caused by methicillin resistant staphylococcus aureus, or MRSA, a staph infection that is resistant to a broad spectrum of antibiotics.

“It’s research, not treatment,” says Kirkpatrick, who obtains informed consent and videotapes all doctor-patient interactions. His Mexican team received authorization for the $30,000 procedure from the San Jose Hospital ethics committee and institutional review board after the FDA rejected Kirkpatrick’s Investigational New Drug exemption application. If the agency had permitted secondary drug investigation, the costs of clinical trials would have been drastically reduced.

Kirkpatrick attributes the FDA’s nonwaiver to the American institutional review board’s failure to “manage” high-risk research. That’s not their mission, counters Jon Merz, associate professor of medical ethics at the University of Pennsylvania: “They approve or disapprove [clinical trials]; their focus [is] the protection of human subjects’ rights and welfare.”

Another reason for Kirkpatrick’s south-of-the-border outsourcing is the threat of U.S. malpractice suits. According to the 2009 Physicians Insurers Association of America Data Sharing Project,
anesthesiology ranks seventh highest of 28 specialties in malpractice monies paid.

Although the jury is still out, pressure — from the public, insurance companies and physicians seeking a medical standard and common protocol — is fueling the gathering of more clinical evidence. A University of California, San Francisco-sponsored trial piggybacks IV ketamine with morphine; Edmondson’s experiments with ketamine and nerve blocks will be shared in an upcoming 50-case paper; Sam Sharar, at the University of Washington Medical School in Seattle, recently tested immersive virtual reality and low-dose ketamine; and the team of Kirkpatrick and Schwartzman plans to publish the results of 200 coma patients. (The current count is at 100.)

Moreover, of the 54 percent of returning war veterans with chronic pain (according to a 2006 survey taken by the American Pain Foundation), many are diagnosed with polytrauma or causalgia (both military “code” for RSD). Easing the way for vets and civilians, more insurers are covering ketamine infusions, says Getson. “Aetna U.S. Healthcare … [is] the only major insurer denying payment.”

At day’s end, however, with or without verifiable data, complex regional pain syndrome patients and their physicians have reason for cautious optimism. Says Getson, “Infusions are the wave of the future.”





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Former student sues school over ‘crippling’ hiking injury

Former student sues school over ‘crippling’ hiking injury

KIM ARLINGTON COURT REPORTER

September 15, 2009

WHEN 15-year-old Jemima Hanna twisted her ankle while hiking on a school camp in 2001, she had to ”soldier on”, a court heard yesterday.

Despite complaining frequently about being in pain, Ms Hanna was allegedly encouraged by supervisors to keep walking and assured their destination was ”just around the corner”.

Now the former Methodist Ladies’ College student is suing the school and the Somerset Camp for negligence, claiming their failure to treat her injury left her crippled.

Her counsel, Paul Menzies, QC, told the Supreme Court she developed complex regional pain syndrome after the incident, affecting her schooling and her future job prospects.

Ms Hanna was one of 20 students attending the three-day camp, a compulsory part of the Burwood school’s curriculum, in February 2001. The group was accompanied by two teachers and supervised by a camp instructor when Ms Hanna sprained her right ankle during a hike through bushland in heavy rain.

Mr Menzies said the defendants ”failed in an egregious fashion” to follow simple guidelines for treating a sprain through rest, compression, elevation and the application of ice.

”What she was required to do …. was to soldier on,” Mr Menzies said. ”She was rolling over on her ankle, she was complaining of pain, she was asking for assistance. They continued to encourage her to walk. Because of the defendants’ negligence, she’s now effectively crippled.”

The camp and the school are defending claims that they failed to provide Ms Hanna with adequate medical treatment and to respond to her complaints of intense pain. Ms Hanna is seeking unspecified damages. She walked to the witness box yesterday with the aid of a stick.

In evidence, she recalled hearing a cracking sound when she hurt her ankle and being encouraged to keep walking to the lunch site, which was half an hour away. She was hobbling and discovered at lunch that her foot was the colour of ”blue jeans”. The camp instructor strapped her ankle with Elastoplast.

Ms Hanna said she hiked for five more hours after lunch and the next day tried to withdraw from physical activities.

”The response was, ‘Everyone has to do it’,” she said. ” I was in excruciating pain. I got told off for not helping enough.”

The hearing continues.






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A Chance to Help a Hero: Marine Spouse Aids Drowning Marine

A Chance to Help a Hero: Marine Spouse Aids Drowning Marine

II Marine Expeditionary Force Public Affairs
Story by Lance Cpl. James W. Clark


MARINE CORPS BASE CAMP LEJEUNE, N.C. – While swimming at the area two pool here, June 18, with her 18-month-old son, Sarah Elliott, the assistant family readiness officer for 1st Battalion, 2nd Marine Regiment, 2nd Marine Division, saw a Marine swimming near them in the shallow end.

After swimming laps, Sgt. Sam Sokphal, Wounded Warrior Battalion-East, Wounded Warrior Regiment, had a seizure wading in the water. While holding her son and calling for help, Elliott pulled Sokphal up and kept his head above water while she waited for assistance. Sokphal was taken to the hospital and released after his recovery.

Sokphal, who suffers from Complex Regional Pain Syndrome in his arm and pain in his back due to surgery, said he uses the pool as a way to ease back into physical activity.

“The swimming helps a lot with the nerve damage. It hurts at first, but feels much better the more you do it,” he said.

Elliott said when she saw Sokphal submerged in the water, she thought he was holding his breath, but when he didn’t come up she came closer to see if he was alright.

“He was on the edge of the pool and underwater, shaking. I walked over to see if he was alright, but had the feeling he wasn’t okay,” Elliott said. “He didn’t respond when I touched his arm, and that’s when I pulled him up out of the water and called for help.”

After Sokphal was taken from the pool in an ambulance, Elliott tried to find out who he was to check on him, but could only learn his first name from lifeguards at the pool.

“I was told he was a single Marine with [Wounded Warrior Battalion-East] and I don’t like the thought of someone being by himself going through that traumatic experience,” Elliott said.

Elliott has been volunteering with the battalion since April, and is known as a caring person…

“Her biggest concern was making sure he was doing okay,” said Shelley Rodriguez, family readiness officer, 1st Battalion, 2nd Marines. “The fact that she saved him is one thing, but the fact that she was so concerned about his well being speaks depths about her character.”

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Two girls lean on each other for support against a rare disease



Two girls lean on each other for support against a rare disease


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LA CRESCENT, Minn. — Sarah Kratt lives with pain every day.

“A lot of people don’t get it because I’m always smiling and happy,” she said.

The 14-year-old, who lives with her family on 20 acres outside La Crescent, was diagnosed in May 2007 with the rare and mysterious complex regional pain syndrome — a chronic pain condition resulting from a dysfunction in the central nervous system.

A chance meeting with April Tillinghast, 15, of Kingwood, Texas, who also has CRPS, sparked a friendship that has helped Sarah handle the pain in her left leg and back.

Sarah’s leg began to hurt in April 2007, said mom, Jill Colbert. It got bad enough that Sarah couldn’t walk and her leg would turn purple.

Doctors were perplexed. Despite physical therapy and pain medications, Sarah’s condition worsened. First she was on crutches, then a walker, then a wheelchair. Finally, she was bed ridden.

“It’s so hard to see your child go through something like this,” Jill said. “You feel so helpless.”

Sarah saw more than 20 doctors, but as time wore on, nothing worked. “Sometimes I wish I could’ve given the doctors my pain, so they would know what it’s like,” she said.

In December 2008, a ray of hope entered their lives in the form of kinesiologist Dr. Alan Trites, who has an office in La Crescent.

“He said Sarah was like an onion,” Jill said, “peeling back each layer and working through her body’s

issues, slowly getting her body back to where it would work with her again.”

Then, in June 2008, while at a month-long pain rehabilitation program at Mayo Clinic, Sarah met April. The connection was almost instant.

“She’s really a positive personality,” April said, “but there’s also this really deep understanding of each other.”

April’s pain was in her right foot, with secondary pain in her head. She had been living with CRPS since 2006.

The girls remained close and continued to communicate via Skype, the online video and phone service, as well as by text messages and e-mails.

“It took that friendship with April to understand and to help Sarah get through all this,” said Sarah’s stepdad, Tom Colbert.

As the girls became closer, so did Jill and April’s mom, Susan Tillinghast.

“I lived in my own shell, taking care of Sarah, finding different things to do,” Jill said. “So it was interesting meeting other parents going through the same thing. You have a connection there. It feels so good.”

In July, Sarah spent two weeks in Kingwood. April also came to La Crescent for a week.

“It’s easier to deal with everything when I’m with her,” Sarah said. “If I hadn’t met her I don’t know where I’d be right now.”

Susan, who spoke on the phone from Kingwood, said the girls have formed a healthy bond.

“The greatest thing is the happiness they seem to share,” Susan said.

Both girls are grateful for simple things and want a normal life.

“I hope I can do something good with this and help somebody else,” April said.

While April would like to volunteer at places like headache clinics, Sarah can see herself becoming a nurse.

“The doctors would breeze in and breeze out, but the nurses were the ones who would take care of you and comfort you,” Sarah said.

There isn’t a cure for CRPS, Jill said, but she wants people who might be suffering from pain to know there is hope.

“Different things work for different people,” Jill said. “Be open to the possibilities.”

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Brave woman vs. disabling disease CRPS

Brave woman vs. disabling disease CRPS

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Kathleen Belliveau of Barre took advantage of a quiet Saturday afternoon last fall to finish some housecleaning. The next morning, she woke up and couldn’t move.

“I couldn’t get up,” the mother of seven remembered. “There was a burning pain on my right side and I couldn’t put any pressure on my leg.”

Her husband brought her to Barre Health Center, where she was given a shot and a painkiller and sent home. The next day she went to her doctor, who gave her another shot and some OxyContin. Nothing worked. A few days later, the pain was so intense that she was admitted to the UMass Memorial Medical Center.

She was hospitalized for two weeks before being transferred to Harrington Memorial Hospital for rehabilitation. Only then was she diagnosed with a poorly understood condition called Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, characterized by severe and relentless pain.

“It hurts,” Ms. Belliveau said simply. “It’s very, very painful, and it never stops. I’m 42 years old, but I feel some days like I’m 100.”

CRPS is a chronic neurological syndrome in which nerves misfire and send constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as surgery, stroke, an accident or injuries. An early diagnosis is the key to recovery, but many doctors are unaware of the condition’s symptoms.

Unfortunately for Ms. Belliveau, her diagnosis came late, in the third or last stage of the condition. Known as the atrophic stage, it involves the loss of motion or body function. While the syndrome isn’t fatal, there’s no cure for the atrophic stage.

What this means for Ms. Belliveau is constant burning on her right side and the loss of use of her right leg. She uses a cane, brace and walker to get around and takes a cocktail of more than 15 pills a day. She described the pain as ice water coursing down her leg, with a “deep flame” heading the other way. “Some days I’ll feel good and can do stuff, but then I’ll be in bed for four days. And it’s going to be like this forever. It stinks, but it is what it is. My body doesn’t work, but my brain is still strong.”

Looking back, Ms. Belliveau remembers that she would sometimes trip, be clumsy or feel pain long before she was diagnosed, but she attributed the symptoms to a previous shoulder injury. Plus, she was busy working and raising her kids. A divorcée who has since remarried, she put herself through dental hygienist school while waitressing on weekends, but she was forced to quit her job last year when she was diagnosed.

“As a hygienist, you have to have control of your instruments or your patients won’t like you very much,” she noted wryly. “I can’t do a lot of what I used to do. The most frustrating part of this is having to depend on other people. But my husband has been a rock through all of this. He’s the best thing that ever happened to me and my children.”

Mark Belliveau, her husband of 12 years, is a sergeant at the Worcester County Jail and House of Correction. He had planned to retire this fall now that their kids are older; the couple looked forward to going on hikes and taking trips to the Cape and the mountains.

CRPS has changed all that.

“This condition comes from nowhere and whacks you,” he said. “I love my wife and I hate to see her like this, but there’s nothing anyone can do. It’s very heavy on my heart. We had everything, and we were looking forward to everything.”

Sgt. Belliveau has been active in the Knights of Columbus at Our Lady of Mount Carmel Church, and the Knights will hold a dinner dance and fundraiser for the couple at 6 p.m. Aug. 29 in the church’s recreation center. Tickets are $20 and can be obtained by calling Pasquale Totaro at San Remo hair salon, (508) 755-5852.

Ms. Belliveau said she agreed to the fundraiser on the condition that it includes an educational component, to raise awareness of CRPS and the importance of an early diagnosis. “I’m learning a lot about this disease myself. I’m at a crossroad, so I just have to take a different road. You deal with it, and the sun comes up again the next day.”

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Complex Regional Pain Syndrome

* * * * * Click Here to watch video * * * * *

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Local support group helps patients with RSD, reflex sympathetic dystrophy syndrome


Local support group helps patients with RSD, reflex sympathetic dystrophy syndrome



by Jennifer Wezensky | Special to the Kalamazoo Gazette
Thursday July 23, 2009, 10:39 AM

KALAMAZOO — When Colleen Westra was in a car accident in 2003, she suffered serious fractures in one of her feet, but they turned out to be just the beginning of her health problems.

The 52-year-old Parchment woman ended up with complex regional pain syndrome, also known as reflex sympathetic dystrophy syndrome (RSD), and now is on disability, unable to work and continually taking medication and undergoing treatment for debilitating pain and other symptoms.

The rare condition can be treated and even cured if caught early, said Dr. Matthew Kuiper, an osteopathic doctor who works as a pain management specialist with Southern Michigan Pain Consultants, in Portage, Marshall and St. Joseph. But it’s a tricky “diagnosis of exclusion” that doesn’t have easy medical tests to rely on, Kuiper said.

The syndrome is a nerve disorder that typically occurs after some sort of trauma or injury. It usually affects limbs and can even result from something as minor as an ankle sprain, a bump of an arm or a blood draw. The nerves become “hyperactive” and rewired for no apparent reason, Kuiper said.

Support group

A support group for those with complex regional pain syndrome, or reflex sympathetic dystrophy syndrome (RSD), will meet from 6 to 8 p.m. July 30, Aug. 12 and Aug. 26 at the Parchment Community Library, 401 S. Riverview Drive. For more information, call Colleen Westra at (269) 381-2283.

Westra’s case was quite advanced by the time it was diagnosed, and she will probably have to live with it the rest of her life, said Kuiper, who treats Westra with nerve blocks, spinal-cord stimulation and medication for nerve pain, along with antidepressants and opiates.

Westra also undergoes physical therapy for the severe burning pain in both of her feet. That’s another strange part of the syndrome, since only one of her feet was injured in the car accident.

The syndrome is somewhat rare in the general population, Kuiper said, but he treats quite a few RSD patients in his practice.

“We don’t really understand why that happens,” he said. “It’s really a problem more of the central nervous system than the peripheral nervous system. It’s more a problem of the spinal cord, more so than of the nerves in the limbs themselves.”

Westra has launched an area support group that meets biweekly at the Parchment Community Library. Ten people attended the first meeting, which included both RSD patients and their family and friends. She said that patients with RSD often feel isolated and misunderstood, as even family members sometimes do not grasp the seriousness of the physical and psychological symptoms.

Westra, a former traveling registered nurse who was making a six-figure income, said that the illness has been devastating to her life.

“The pain and symptoms can be different from day to day,” she said. “It makes it so that you can’t plan anything because you don’t know what your pain is going to be.”

The use of narcotics to treat the pain left her with a severe case of sleep apnea. “It’s like a vicious cycle sometimes,” she said.

Support-group participant Janet Guiles, 42, of Portage, was diagnosed with RSD in 2006, but physicians believe that her illness dates back to 2003. It began with knee and foot pain. She is largely confined to her home, and when she does go out, she uses a walker. The most difficult part has been seeing the impact of her illness on her family, including her husband and two teens.

“It’s very hard to go through, especially when you have kids in the home,” said Guiles, who has other health problems — fibromyalgia, endometriosis and fibroids. “It’s something that’s just horrible. I don’t wish it on anybody. It will never go away.”

Sylvia Sanchez, 43, of Mattawan, was diagnosed with the syndrome last October after a previous work injury.

Now Sanchez suffers from severe pain in her right arm and hand. She is on heavy pain medication that leaves her unable to function normally, she said. She can’t work, drive, dress herself or perform many basic daily functions. And because she can’t work and has yet to receive disability benefits, she has lost her home and her car.

“The pain is just so miserable,” said Sanchez, who has also attended the support group. “I wouldn’t wish this on my worst enemy. This has taken a lot from me. It really has. I am so depressed. It really takes a toll on your life.”





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Maximus makes it easy for Jo



Maximus makes it easy for Jo


Fran Cleland

July 6, 2009

A STALLION noted for his temperament and good looks heads for New Zealand this month to hopefully become the mount for a leading disabled dressage rider at the next World Equestrian Games.

Maximus, a bay 16.2hh Warmblood stallion owned by Norm Clark of Tatura, has competed successfully in dressage and showjumping.

He will be leased in New Zealand to Jo Jackson, an ex-patriate Great Britain winner of three gold medals in Paralympics grade IV, three gold medals in world Para Equestrian championships Grade IV and winner of the NZ Para Equestrian Championships grade IV in 2007 and 2008.

Jo is now a permanent resident of New Zealand.

She hopes to qualify the big horse for next year’s World Equestrian Games.

Jo rode Norm Clark’s Welsh Cob stallion Barnon Imperial Jack at Riding for the Disabled Australian championships in 2008.

She also rode Maximus on a recent visit to Tatura and believes he fills all the criteria for a Para Olympic champion dressage horse.

Jo rides with one artificial hand and also suffers from the crippling Complex Regional Pain Syndrome condition which means she has a constant tingling pain through her entire body.

Her coach, NZ Para trainer Kate Honour, said Maximus was perfect for the job. “He’s a high-quality dressage horse, which is hard to find, so we have high hopes for the pair,” she said.

Norm Clark said he would be sorry to see him go.

“In New Zealand he will stand at stud as well as competing for Jo, and if he makes the New Zealand team for Kentucky and the London Olympics in 2012 it will be a real thrill for all of us.”







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Woman is facing chronic disease by creating awareness


Woman is facing chronic disease by creating awareness

Sets up Facebook account;

wants emails sent to ‘The Oprah Winfrey Show’ on July 8

NORTH BRUNSWICK — In 1996, Christine Ortega had hundreds of her family and friends nominate her uncle, who had been diagnosed with reflex sympathetic dystrophy (RSD), to carry the torch in the Olympics, via a contest on a local radio station.

Hoping she could get him enough press coverage so that he could share his story about this not-very-well-known chronic regional pain syndrome, which is a disease of the nervous system, she succeeded in having him tell his story on NBC News.

Although he could not carry the torch, Ortega went in his place, carrying the Olympic symbol for eight-tenths of a mile through Philadelphia.

Ironically, Ortega now is trying to promote her own story about RSD after being diagnosed this year with the disease. In order to do so, she has set up a Facebook page — “A Plea to Oprah for RSD … We Need Your Help!!!!” — to try to acquire enough support so that talk show host Oprah Winfrey will discuss the topic on her show.

“Who better than Oprah to get the word out on something, because she reaches people worldwide,” Ortega said.

The former North Brunswick resident began recognizing her own symptoms in January. On Jan. 20, the 37-year-old slipped and fell on ice and fell flat on her back, but thought she was experiencing normal muscle aches. Two days later, she slipped on a movie ticket left on the staircase, and again fell flat.

But she didn’t have much cause for concern until about a week later, when she banged the same leg she had injured earlier into a bed frame and “it felt like a hot iron was searing my skin” — a similar description given by her uncle, who said he feels like he is in a vat of hot burning oil and can’t get out.

She went to her doctor, who sent her to an orthopedist, who diagnosed her with RSD. She was prescribed oral steroids and physical therapy.

In April she went to an RSD specialist, but she said the disease has very few specialists, and those who do treat patients affected by the chronic pain that is caused by overstimulation of sensory nerve fibers may not have appointments available for years.

Although Ortega was able to secure an appointment due to a cancellation, her doctor moved to Ohio, and a Philadelphia doctor said he could not see her until 2011.

“So many people feel helpless because they can’t get a doctor for a long time or they can’t find a specialist,” she said.

In the meantime, the North Brunswick Township High School graduate is continuing with anti-seizure medication to help improve her circulation and can use muscle relaxers as needed.

She said it hurts to do the dishes, play with her 5-year-old twins and step on the gas pedal while driving. By the end of the day, it can hurt to turn her head, and if she overexerts herself, it can be difficult getting out of bed the next morning.

“It has completely changed my life,” the Cherry Hill resident said. “With this disease, moving is imperative. Not moving around at all can cause limbs to stiffen up and can cause dystrophy.

Moving too much can be painful.”

Now, Ortega is hoping that on July 8, hundreds of people will send emails to Oprah so that so many emails on one given day will make an impact.

She said that even though millions of Americans are affected by RSD, misdiagnoses are common, and late diagnosis leads to the disease spreading quickly to other parts of the body.

“The theory [is] if enough people email Oprah on one day, her producers can’t ignore this outcry for awareness,” Ortega said. “I want as many people in the world to know about it.”

The link to Ortega’s Facebook page is http://www.facebook.com/home.php?#/gr oup.php?gid=113710996342&ref=ts.

Anyone who wishes to help is asked to log on to Oprah’s website, http://www.Oprah.com, on July 8 and at the bottom of the page click on “Contact Us,” join the website, and then click on “Send us your show suggestions” to send a general email using the title “A Plea for RSD Awareness.”

Contact Jennifer Amato at jamato@gmnews.com.






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